My Story of Migraines, Autism Parenting, and Personal Responsibility

by Tim on March 19, 2013

This is the story of how I let my body fall apart. This isn’t quite yet the story of what I’m ultimately going to do about it, but that story is coming.

Today is also Diagnosis Day, the fifth anniversary of the day our J-Man was diagnosed as autistic. It’s often a day of many emotions for me. I look back at this autism journey we’ve been on. I see how far we have come on this road.

CautionAfter spending the first couple of Diagnosis Days wondering how to celebrate it, the last two years I’ve celebrated this road by literally running marathons on it.

But then lately somebody planted a bunch of signs in the middle of my road. And I hit them. And it hurt. A lot.

I am writing this because the signs said, You are killing yourself. You are being stupid. You need to stop. Maybe you are seeing the same signs, and perhaps you can learn from my bad example.

I’ve been struggling for months with what I originally thought were ‘serious, chronic sinus headaches’ but which evolved into full-on, nuclear, apocalyptic migraines that have now lasted in some form 24 hours a day, 7 days a week, for almost the past two months. I have had less than 24 pain-free hours since January, all of which were thanks to strong narcotics.

After a long history of sinus and allergy issues, I figured these would eventually subside enough for me to start functioning OK again. It’s an ongoing cycle with me as the seasons change. I rationalized my way to various excuses. This turned out to be an epic mistake.

This wave of headaches that began in January didn’t go away; they just got worse and worse. The obvious solution was to make a doctor’s appointment, except I didn’t have a primary care doctor. The last two doctors I had were terrible, and I just gave up years ago trying to find a new one. Sorting through the available providers in the midst of headaches is not really the time to do that, but I finally did.

The earliest appointment I could get with someone recommended to me was three weeks after I finally made the call, a call I made at the kitchen table, sitting in the dark, in agony, while I was holding my head up with one hand and holding the telephone with the other. I hung up the phone and cried.

I made a lot of mistakes here, and as I approach my 40th birthday this year, I realize these are mistakes I can no longer afford to make.

A friend of mine was diagnosed with testicular cancer recently. He was smart enough to do the right things and catch it in time. A family member not that much older than us died of cancer recently. I have friends diagnosed in recent years with MS, strokes, and other possible life-threatening or life-altering conditions. Approximately 1-in-50 of my high school graduating class are now dead.

I am painfully aware of how important it is as an autism parent for us to be around for the long run. If something happens to one or both of us, I don’t know what would happen to our kids. Assuming we will be around, the quality of our physical lives is essential to being the kind of parents we want to be. There are many demands in our daily lives, and we want to do more than just survive. We want to be great parents.

Throughout this migraine disaster, Mary has had to be both parents most of the time. We both need to be somewhere in the vicinity of our best most of the time, but instead I’ve been nearly incapacitated.

I screwed up, badly. I didn’t have a plan in place to take care of myself. I ended up not waiting that three weeks and took myself to urgent care, got a CT scan (thankfully was clear), and was treated for a sinus infection (which I did have), but urgent cares aren’t designed for ongoing relationships of medical care. The headaches got a little better but then went downhill again. I finally limped into that appointment with my new doctor on the edge of physically falling apart. That was almost three weeks ago now. Today is about six weeks after I originally made that phone call.

I barely remember the last three weeks. It’s been a fog of medication, scans and labs (all normal, thankfully), numerous doctor visits, lots of time trying to find specialists, more trips to the pharmacy than I can count, lots of time bedridden or unable to get up out of the recliner, so much missed work that it’s a wonder I still have clients, and a trip to the emergency room when I just couldn’t take it anymore. And they still don’t know why I’m having crushing migraines.

I started writing this post weeks ago. My words have meandered and morphed and the point of this post has changed several times. I’m still hurting and my brain is clouded by the medications that are trying to make me better.

But here’s the cold, hard truth. And I accept it. If you absorb nothing else of what I say here, read this because you need to understand this for yourself.

This is my fault. I should have put things in place to take better care of myself and my health. I should have had a regular doctor. I should have gone to the doctor when I started having sinus and lesser headache issues last year. They could have done more to determine a baseline. It would have been much easier to look at prevention and lifestyle changes then. Now, I’m just surviving the day. And everyone around me is paying for it. I let Mary down. I let my kids down. I let the people I work with down.

Redeem YourselfI am not being hard on myself, so don’t even say it. It was my choice to not seek care for myself. It’s my responsibility and my choice. And it’s your choice. You don’t get to let yourself off the hook either.

I made many poor choices. I thought by exercising regularly and eating relatively well that I was exempt from all the other stuff. Wrong.

There are things you do to take care of yourself and to have the people in place you need to look after your health. There are things you do to take care of yourself and your health because you want to show respect to the people you love, to the people who love you. I didn’t do that. And my family is paying for that.

Learn from my mistakes. Take care of yourselves. Get a primary care doctor if you don’t have one. Get a yearly exam. Get your labs and scans done regularly and establish a baseline for you. Go to the doctor for chronic problems long before they get out of hand. It’s so much easier to prevent something or stop something early.

When this is over, I will have learned a very hard and painful lesson. I have lost most of 2013 already, and I will have many, many lifestyle changes to make.

One of the best ways you can say “I love you, too” to your spouse and child is to treat with respect the one they love – yourself. So, start doing that. Right now.

Image credits:
“Caution” – Creative Commons License ptufts via Compfight

“Soda and Pet Food City” – Creative Commons License Rusty Clark via Compfight

{ 7 comments… read them below or add one }

Miz Kp March 19, 2013 at 9:38 pm

I really hope you feel better, Tim. I know headaches can be a pain but I can only imagine how painful a migraine can be. The overall message of your post is one that all of us parents need to adhere to. What good are we if we are not well and healthy for ourselves and our children? I am also asking myself this because there are times that I also let things go. This post is a swift kick in the butt for me and many other parents so thank you and feel better soon.

Patty March 19, 2013 at 10:43 pm

Thank you for writing this, Tim. I have been trying to get Bil to go to the doctor for about 2 years because of headaches he keeps having. He thinks it’s allergies, but these headaches seem much too severe to me. I am making him read this post, because maybe he can learn from you.

I so, so hope you feel better soon. I cannot imagine how agonizing this has to be.

Debby March 20, 2013 at 1:37 pm

I’m so sorry you guys are going through this. I hope for resolution soon. Lessons learned are helpful but in the moment all you can do is know this: “Everything will be okay in the end. If its not okay, it’s not the end.” I wish the end of all this will come soon.

Stimey March 20, 2013 at 1:47 pm

I hate that this is happening to you. You should understand that while, yes, it is SO crucial to take care of yourself and have doctors and plan and be proactive, it’s NOT your fault. You’re doing the best you can. Thinking of you.

Niksmom March 21, 2013 at 8:42 am

Sending you love and healing prayers.

Anna May 26, 2013 at 10:52 pm

I am so sorry to read that you are in poor health. It is a testament to your strength that you are trying to educate other parents and caregivers about improving their self-care. I hope you are feeling better, day by day, and that all will be well.

S.W. Atwell February 6, 2014 at 10:06 pm

Tim, I had to learn my migraine lesson the hard way. In one way, I’m enviably lucky, because my migraine headaches are generally not very painful. However, they are complex and can manifest in different ways– hand tremors, word retrieval difficulty, speaking very slowly (for me), weakness (to the point of being unable to use) my legs, loss of peripheral sensation in my arms and legs, complete loss of balance, slurred speech, ringing in the ears, vomiting (suddenly!) if I see too many bright headlights while driving in the dark. Fortunately, the hearing/ringing in the ears issues are nearly always the first thing to show up and that means I need to get a lot of rest and stay well hydrated. If I do those things, I can nearly always avoid a dramatic episode like the one that landed me in the ER a few years ago, when I seemed exactly like a person having a stroke, except that both sides of my body were identically effected. I had read about the physiological processes that cause people to become fatally ill from chronic high stress. As I was being rolled into the ER that day, I thought, “You f—ed up. You knew better. You read all that stuff about corticosteroids and strokes. You just thought you had another ten years to play around with stress, so you didn’t do anything about it. You were wrong!” At that point, I really believed something terrible was happening to my body.

It wasn’t, and eventually I got the diagnosis of “basilar migraines,” often called “spinal migraines.” In my case, psychological stress might not be the only cause. I am also a survivor of carbon monoxide poisoning. I can still do everything I used to, but I need a lot more rest, and I write and read far more slowly than I used to. That’s a bummer, because I am a lawyer in solo practice, mostly doing special education law. Regardless of whether stress and fatigue are entirely to blame for the migraines, they certainly correlate with their onset.

Spinal migraines are not dangerous. Even so, I took the episode that sent me to the ER as a warning. My body was saying, “We can’t put up with this anymore. We can’t promise not to have a stroke or a heart attack next time. You, Lady, are running out of chances.”

I’m 48, with very little time in the workplace because I am the mother of two children with autism, one very severely affected. Retirement is a pipe dream, so I have to make sure that my work doesn’t make me too sick to, well, work! My law practice wasn’t exactly thriving at the time of the ER incident, so I began to babysit, often for special needs children. I now mostly how I support myself and my daughter by babysitting and I experience healing (not to mention entertainment!) from my time with young children- children who are either developing typically or who are young enough that they may yet make great strides. I still accept legal clients, but I have to be selective. I can only handle a few active cases at a time and I can no longer drive more than an hour or two from my office to represent parents at IEP meetings or due process hearings. I think of whatever I earn as a lawyer as “pennies from heaven.” I don’t count on it to support us.

Many parents are not as lucky as I am. My son, who is severely affected by autism is in a group home. I believe the group home saved his vision and his hearing, and perhaps his life– he used to hit his head against hard objects hundreds of time a day. So, I am not contending with the physical exhaustion that goes along with hands-on care of a person like my son. My daughter’s autism is milder and she can dress, shower, entertain herself and make simple meals without my assistance. Also, during the years when I earned a nice salary, I was still cautious about money. I took out only 1/3 of the mortgage for which I qualified when I bought our home. Lucky me to live in a city where a home in a safe neighborhood doesn’t cost a quarter of a million dollars!

Let me tell you, the “second edition” of my brain (as I think of the way my mind works post-CO poisoning) is sort of pleasant. I can’t think as fast, so I can’t imagine the next catastrophe very well. In fact, I can no longer think about several things at a time. Sometimes, I need to stop thinking about things that upset or worry me or I won’t be able to pay enough attention to tidy a room or cook a meal. Now that my thoughts no longer race, I notice things I haven’t since I was a child– at the end of the day, I will still remember the unusual red color of a truck that sat next to me at a stop sign or the funny shape of a cloud I saw while crossing a bridge. I tend to sit on the floor more, because I am not tied to my computer. That means my back doesn’t hurt as often and it means I spend more time petting my dogs. Especially my fragile elderly dog, who can no longer jump on furniture to get petted. I have to take rests from reading, but that means I can spend time sitting with my eyes shut thinking about what I have read. A lot of the time, I do not have the attention span to be anywhere but completely in the present, so I don’t spend as much time remembering my lovely boy as he was before autism. As a result, I experience less grief. Being “fuzzy minded” takes the edge off a lot of pain. Again, I’m fortunate, because my brain is “fuzzed” enough to soften mental pain without being so damaged that I can no longer do the things I need to.

I have economic fears I never had before and I miss the status that comes with being a lawyer. Sure, a lot of people hate lawyers, but they nearly always perceive us as pretty damned smart. Aside from that, I’m rather glad that my body gave me a warning and that the effects of CO exposure forced me to listen to it. Life is simply more pleasant this way.

So many parents do not have the option of changing their lives as much as I did. Many have far more difficult lives to begin with. I do not tell my story because I want to prescribe a solution. I tell it so that other parents will not feel that they are weak if stress is making them ill and I tell it so that other parents may feel more free to make any changes that are within their power.

Sincerely,
S.W. Atwell

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